In order for patients and families to choose the best medical care, they need the tools and information to make educated decisions. Accurate and accessible data allows patients and families to compare programs, evaluate their benefits and risks, and choose the program that best fits their needs. Industry-wide transparency is necessary for families to make informed decisions – without it, patients may experience unnecessary risk or harm.

Currently, it’s very difficult for a parent to evaluate and compare program performances for various reasons, which include:

Not all organizations report their outcomes to national databases

Organizations that do report their outcomes may do so differently than other organizations, leading to variations in the data

Outcomes data may be difficult to understand or parents may not know what questions to ask

Taking Action

In August 2015, Lurie Children’s sponsored the Pediatric Congenital Heart Association’s Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes. National experts on congenital heart disease data and reporting gathered for the two-day summit with two goals in mind:

To inform, educate and empower patients and families to actively participate in data-driven shared-decision making

To use data sharing and collaborative learning to improve pediatric and congenital cardiovascular outcomes, reduce variation, and increase value at all pediatric and congenital cardiovascular programs

The summit was attended by many leaders in the pediatric cardiovascular community and was deemed a tremendous success. A diverse group of stakeholders, including surgeons, cardiologists, nurses, professional societies and associations, payers, federal agencies, policy makers, parents and patients collaborated to achieve consensus on the important issue of public reporting.

Key Attendees

Government: Illinois Senator Durbin’s Office, National Institutes of Health, Centers for Disease Control and Prevention, Agency for Healthcare Research and Quality, and England’s National Institute for Cardiovascular Outcomes Research

Impacting the Future of Pediatric Healthcare

As a result of the meeting, a working group of attendees is producing a white paper to summarize the key points from the meeting; the white paper will be published in a leading cardiovascular journal. A follow-up meeting will also take place to discuss next steps for furthering the issue and incorporating standards into future legislation. Read more about the summit on the PCHA website.

Lurie Children's Earns Top Marks in CNN Transparency Report Card

Lurie Children’s pediatric heart surgery program is one of only three in the country to publicly report quality and outcomes data in every category tracked in a CNN transparency report card.

The CNN article stresses that transparency about heart surgery success rates is critical for parents choosing the best hospital for their child. One of these key transparency measures is public reporting of outcomes to the Society for Thoracic Surgeons (STS), and this data is considered to be the “gold standard.” A consumer-friendly guide on how to understand a hospital’s STS data and other reported quality measures accompanies the CNN article.